Will the world pay up to end HIV? Global AIDS funding

Issue 212
Summer
2012
Will the world pay up to end HIV?
Global AIDS funding page 4
The gay globe
Data from three large internet
surveys of gay men on sex,
safety and stigma page 10
Plus
The new activism page 16
London prescribing changes – the patient
experience page 3
HIV treatment update
Editor Gus Cairns
Sub-editing & proofreading Greta Hughson
Design Kieran McCann
Printing Cambrian Printers
ISSN 17567890
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Medical advisory panel
Dr Sris Allan
Dr Tristan Barber
Dr Fiona Boag
Dr Ray Brettle
David A Castelnovo
Professor Janet Darbyshire OBE
Heather Leake Date MRPharmS
Dr Martin Fisher
Professor Brian Gazzard
Professor Frances Gotch
Liz Hodges
Professor Margaret Johnson
Dr Graeme Moyle
Dr Adrian Palfreeman
Kholoud Porter PhD
Clare Stradling
Dr Steve Taylor
Professor Jonathan Weber
Dr Helen Williams
Dr Ian Williams
Dr Mike Youle
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review panel, please visit www.aidsmap.com/
page/1445504
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In this issue
Gus Cairns
Editor
Does the world have the political will to end HIV? This isn’t a rhetorical question.
We could probably do it.
We have eradicated one disease, smallpox, while another, polio, is nearly gone.
By using vaccines, you will point out, something we don’t have against HIV. True:
but these are highly contagious diseases, spread with a touch or a breath, like that
other epidemic we have so far failed to contain, tuberculosis.
HIV is, on the other hand, hard to catch and if someone takes the treatment for
it, they can become, to all intents and purposes, non-infectious. Modellers show
that if you could test people often enough, diagnose them soon enough, treat
them fast enough, you could get to the crucial point where the average person
with HIV has a less-than-50% chance of infecting anyone else in their lifetime.
Yet HPTN 052, the study that finally proved that, arrived just at the wrong
time: a couple of years into an economic crisis in the rich countries which have
funded HIV treatment. A potential disaster; history shows this virus can mount
a rapid comeback if the pressure is taken off.
The answer, as Laura Gonzalez Lopez finds out on page 5, may partly lie in
new ideas like the ‘Robin Hood’ financial transaction tax, which would skim
off a tiny percentage of bankers’ profits. But it also lies in countries with
expanding economies and significant local HIV problems taking more
responsibility for containing their epidemics and those in neighbouring but
less well-resourced countries.
The reason they don’t is partly due to massive economic inequality between
rich and poor. It’s also partly due to political corruption and healthcare systems
unsuited to dealing with the multifactorial causes of HIV. (This hasn’t, though,
held back South Africa or Brazil, two of the most economically unequal countries
in the world.)
But it’s also to do with stigma. A number of the countries with the worst HIV
problems also have the worst records of stigma and discrimination against groups
most vulnerable to HIV.
Russia, for instance, is still vehemently opposed to a harm-reduction
approach to HIV and hepatitis prevention in injecting drug users. The Global
Commission on Drug Policy is only the latest body to have critiqued this approach
as counter-productive.
But the stigma that it’s probably most crucial to address is that against men
who have sex with men (MSM). As we are reminded on page 10, there is a
resurgent HIV epidemic in MSM in a lot of countries where HIV in other groups is
either declining or was never that common.
This is largely caused by growing opportunities to observe, connect with
and emulate gay role models and lives, but in some countries this is meeting
violent opposition from conservative societal and religious cultures – making it
hard or impossible to develop MSM-specific prevention or treatment services.
At this pivotal moment, it’s vital to get across that public health is not served by
criminalising gay men. We have to confront homophobia if we are to defeat HIV.
Upfront
HIV treatment update | Issue 212 | Summer 2012
3
Switching drugs for cost
reasons – the patient experience
by Gus Cairns
In April 2011, the London Specialised
Commissioning Group (LSCG),1 which funds
HIV treatment in the capital, issued a new set
of messages to clinics on HIV drug prescribing.
The purpose was to save money. The
HIV budget had not been raised despite an
increase in patient numbers and the LSCG’s
aim was to save £8 million in two years that
would otherwise have come from measures
such as reducing clinic services.
The LSCG negotiated agreements with
several companies through which the cost
of their drugs would fall if sufficient volumes
were purchased (that is, if more people
in London were prescribed them). The
two most significant deals concerned the
dual-NRTI pill Kivexa (abacavir/3TC) and the
protease inhibitor (PI) atazanavir (Reyataz).
The new prescribing framework stated that
people should not be given sub-optimal
treatment or suffer serious side-effects.
Most of the increased use of Kivexa would
occur by prescribing it to people starting HIV
therapy instead of Truvada (tenofovir/FTC)
or Atripla (Truvada/efavirenz); few people
would have to change from a combination
they were already taking. In the case of
atazanavir, however, some people would
have to be switched from other drugs. It was
hoped that these changes would largely be
from older and less tolerable PIs.
Although we now have sufficient options
in most areas to choose between drugs
that are roughly equivalent in effect and
tolerability, this was the first time a public
funder in a high-income country had openly
agreed to change prescribing practice in
HIV therapy for reasons of cost rather than
medical benefit. Because of this, the LSCG
instituted an ongoing programme of audits
of clinical outcomes to measure whether
patients’ health or experience suffered from
the changes.
In addition, the UK Community Advisory
Board (UK-CAB),2 the national network of
HIV treatment activists, commissioned its
own internet survey, which appeared on
various websites, including aidsmap.com
and i-base.info.
The findings of the community survey
are amongst the first data to come from the
London prescribing changes: so far, only one
audit of atazanavir use at one clinic has been
presented, at the BHIVA conference in April.3
There were 226 eligible responses; 70%
were white, 14% were black African and
78% gay or bisexual. The survey asked
people if they had changed any of their antiHIV drugs since April 2011 and, if so, whether
it was their idea or their doctor’s.
In fact, only 77 of the 226 had actually
changed their meds – roughly one third.
Of these 77, 23 (30%) had asked to change
their drugs themselves; the main reason
for requesting a change was side-effects
(16 cases). In the 54 whose doctor asked
them to change, the main reasons were
‘to do with cost savings’ (32 people) or
‘because of new prescribing arrangements’
(18 – many respondents ticked both of these
reasons). No more than four respondents
in the survey changed their drugs due to
virological failure and/or resistance.
Of those asked to change, only 31 (57%)
actually did so. Twenty-two individuals did
not change and these may largely overlap
with the 22 who said they weren’t happy
with their doctor’s explanation for the
change. Eleven individuals (23%) said they
were not given the option to remain on their
previous treatment and two said they were
not consulted at all; they just turned up at
their clinic and found a new prescription
waiting for them.
Of 41 people who answered whether
their health had been affected by the
change, six (15%) said it had got worse,
12 (30%) said it had improved, and 23 said
there was no difference.
The biggest specific change was the one
you’d expect: 56% more people were on
atazanavir after switching treatments than
before, and 78% fewer on the older PI Kaletra
(lopinavir/r). There were smaller switches
towards both Kivexa and darunavir/r (about
25% more) and away from Truvada (17%
fewer). Given the small numbers, however,
these only represent movements of 10 to 20
patients from and to specific drugs.
Self-selected surveys like this can’t
estimate actual changes in the patient
population because they only include people
motivated enough to answer a survey.
The individual comments are often the most
interesting data. Some people were happy to
change treatment: “I trust my doctor”; “I was
impressed how open they were about the
reasons”; “I suggested it myself as a way to
save money”; “I support the changes, the NHS
needs to save money, but patients should be
able to access independent advice”.
But the majority who left comments
on changing were, perhaps inevitably,
the less-than-happy. Several mentioned
feeling ‘pressured’ by their doctor or feeling
‘stress’ about moving on from regimens that
were working. “Why break something that
doesn’t need fixing?” said one; another said
“If I’d not been an articulate gay man I might
not have resisted the pressure to change.”
Only a couple saw it as a matter of principle
not to change, but several said the way it
had been handled had led to a breakdown of
trust with their doctor.
The most significant finding, however,
may be that few patients actually answered
the survey, despite pretty wide publicity,
and of them, how few had changed.
Michael Marr, UK-CAB Chair, commented:
“This survey is encouraging. From over
25,000 people on treatment in London,
we found very few examples of problems
from the changes. By pressuring the
pharma companies to reduce their prices,
HIV services in London have saved over £6
million while maintaining some of the best
care in the UK.”
zzMore data will be presented at the next
UK-CAB meeting and to the LSCG, and will
help supplement audit data to be presented
at forthcoming BHIVA conferences.
4
HIV treatment update | Issue 212 | Summer 2012
Global
AIDS
funding
Will the
world
pay up
to end
HIV?
HIV treatment update | Issue 212 | Summer 2012
5
We are at a critical point in the history of the HIV epidemic.
We potentially have the tools to end it but, asks guest writer
Laura Lopez Gonzalez, where will the money come from?
T
his year, the Global Fund to Fight
AIDS, TB and Malaria marked
its tenth birthday. Conceived at
the 2000 G8 summit in Japan,
the Fund garnered more than US$2bn in
pledges from donors when it was launched
in 2002. By 2009, it had put almost 2.5
million people on HIV treatment and was
underwriting the cost of about half of all HIV
treatment in developing countries. It had
also grown to account for two-thirds of TB
funding worldwide, in an effort to tackle the
leading cause of death among people living
with HIV.
Just a year after the Fund’s creation,
George W Bush created the President’s
Emergency Plan for AIDS Relief (PEPFAR).
The United States is now the largest
government donor to the HIV response
globally, accounting for about 54% of
international funding, according to the
Joint United Nations Programme on HIV/
AIDS (UNAIDS). In its first five years, PEPFAR
prevented more than 740,000 AIDS-related
deaths in the African countries in which it
worked and had, on average, almost
halved general mortality in people living
in these countries.1
But in 2008, the global recession hit and
both the Fund and PEPFAR began to feel
the repercussions. In 2009, almost 15% of
donor pledges to the Fund went unpaid; in
2010, almost a quarter failed to materialise.
PEPFAR funding, which had increased on
average by about US$0.9 billion annually
since its creation, also began to flatline in
2009 and hovered around US$6.8 billion
for the next three years.
The story of the Global Fund is the story
of the international response to HIV: born
ten years ago amid times of plenty, the
Fund was successful beyond its founders’
dreams. As this sense of plenty has waned,
the Fund has faced shortfalls and tough
choices in a shifting aid paradigm, with new
debates, including who should be giving,
how much and to whom. At a time when
the world knows more than ever before
about how to stop HIV, funding shortfalls
threaten not only the gains made during
the life of the Fund, but also the possibility
of capitalising on recent scientific findings
regarding HIV prevention. Securing the
future of international HIV funding is likely
to put more pressure on mechanisms such
as the Fund to show value-for-money results
to donor countries dealing with domestic
economic downturns.
The crisis comes to a head
The impact of the global economic crisis
on HIV funding became clear in 2011, when
the Fund cancelled Round 11 after donors
failed to deliver US$2.2 billion. Some donors
– Spain, Italy and Ireland – cited domestic
recessions. Others, including Germany,
temporarily suspended aid after media
reports highlighted alleged fraud among
Fund recipients, identified by the Fund’s
Office of the Inspector General.
This retreat may have been heavyhanded, says Michael Gerson. He was
Bush’s former speechwriter and a strong
advocate for PEPFAR’s creation; he has since
joined ONE, an international campaigning
organisation addressing preventable disease
and poverty, as a senior adviser.
“When the Global Fund exposed
If we want
transparency and
accountability in aid
programmes, we can’t
punish transparency
when it happens.
Fraud can be deadly
and should be
punished, but the
exposure of fraud is
an achievement – an
essential commitment
of effective aid.
Michael Gerson
corruption in a few of its own country
programmes in 2011, some legislators and
countries used this information to indict the
entire programme,” he says, speaking in a
personal capacity. “If we want transparency
and accountability in aid programmes,
we can’t punish transparency when it
happens. Fraud can be deadly and should
be punished, but the exposure of fraud is an
achievement – an essential commitment of
effective aid.”
The alleged fraud was neither new nor
specific to the Global Fund. Both the Global
Alliance for Vaccines and Immunisation
(GAVI) and USAID have seen similar cases in
recent years but, for Michel Kazatchkine, the
Executive Director of the Fund at the time,
the backlash was a sign of the times.
“In that economic context, the donors
said: ‘Okay, we can’t explain to our people
why we are funding countries that
misuse money, so we will withhold our
contributions.’ That decision was somehow
unilaterally taken and I think the collective
effort suffered from that.
“I think the big lesson is that collective
effort is possible and yet hugely fragile
and this economic and financial context
is putting immense pressure on that,” he
adds. “To me, the main collateral damage
of the economic financial crises has been
the decrease in political mobilisation…
we’ve lost the concept of global solidarity
in the discourse.”
Although the amount of money affected
by the alleged fraud was relatively small,
the Fund instituted a review of its financial
risk management and addressed falling
donor confidence. As part of resulting
reforms, Colombian banker Gabriel
Jaramillo assumed the newly created
position of General Manager. After
criticism regarding his leadership of the
Fund, Kazatchkine resigned.
Jaramillo’s position is expected to reduce
the heavy demands placed on former
executive directors, which may have
contributed to the criticism of Kazatchkine.
Laurie Garrett is Senior Fellow for Global
Health at the Council of Foreign Relations,
a US think-tank on international affairs. She
says: “We set up these multilateral systems
to look at global health problems, of which
the Fund is one of the newest, but we expect
these executive directors to spend their lives
on planes, to appear at every ribbon-cutting
6
HIV treatment update | Issue 212 | Summer 2012
and be in every village. At the same time,
they can’t run their organisations… we burn
these people out.”
Following the reforms, and as donors
returned, the Fund announced US$1.6 billion
would be available for new commitments
as donors returned and the Bill and
Melinda Gates Foundation pledged a further
US$750 million.
Newly announced funds are also partly a
result of a cost-saving staff reduction at the
Fund’s Geneva secretariat. However, there
are concerns that reforms have focused too
heavily on financial management and too
little on results.
Amanda Glassman is director of Global
Health Policy and a research fellow at the
Center for Global Development (CGD).
She says: “There’s certainly been an
increase in the scrutinising of spending, but
there’s been a [knock-on] effect because of
the fear of committing errors. If you look at
disbursements in 2011 into 2012, they look
very low.”
Open Society Foundations’ (OSF) research
conducted in three southern African
countries found that, in some countries, the
Fund had not disbursed all of the monies
allotted under Phase I of some grants. In
some cases, this money was deducted from
Phase II renewals, according to the OSF
research report,The First to Go: Communitylevel effects of Global Fund shortages in
southern Africa.2
“The Global Fund is going to have to
convey to country partners what they need
to do and build their confidence to spend
again,” Glassman adds. “You want people to
worry more about reaching the objectives
and measuring results in a rigorous manner
than whether or not they’ve submitted a
photocopy of a receipt or the original.”
Similar concerns have been expressed
in commentaries published by the Global
Fund Observer (GFO), a news service
run by the Nairobi-based Global Fund
watchdog, Aidspan. An October 2011
article3 said this fear of spending may also
apply to secretariat staff, who are in danger
of becoming micro-managers as they
nervously attempt to minimise and even
eliminate risk.
The waiting game
The Fund has now said it will open new
funding opportunities to countries in late
September 2012 and begin making decisions
on applications by April 2013.
As countries await these opportunities,
they are struggling to deal with the gap in
what, until now, had been regular funding
opportunities from the body, according to
international humanitarian organisation
Médecins Sans Frontières (MSF). This
To me, the main
collateral damage of
the economic financial
crises has been the
decrease in political
mobilisation…we’ve lost
the concept of global
solidarity in the
discourse.
Michel Kazatchkine, former Executive
Director of the Global Fund to Fight
AIDS, TB and Malaria
You want people
to worry more about
reaching the
objectives and
measuring results in
a rigorous manner
than whether or not
they’ve submitted a
photocopy of a receipt
or the original.
Amanda Glassman, director of Global
Health Policy and a research fellow,
Center for Global Development
situation was reported in MSF’s March
2012 report: Losing Ground: How funding
shortfalls and the cancellation of the Global
Fund’s Round 11 are jeopardising the fight
against HIV & TB.4
Countries such as the Democratic
Republic of Congo (DRC), Guinea and
Burma are already capping the number of
people who can receive antiretroviral (ARV)
treatment, while Uganda will be unable to
increase the number of people starting ARV
treatment annually.
Treatment caps will not only jeopardise
countries’ abilities to meet the WHO
guidelines but also their capacity to
capitalise on recent research findings from
the HPTN 052 study, which showed that
starting people with HIV on treatment
at CD4 counts of 350 to 550 (when they
would otherwise have been ineligible for
treatment) reduced their risk of transmitting
HIV to sexual partners by 96%.5
In 2009, after studies showed that
early treatment not only saved lives but
also reduced loss to follow-up and TB
incidence, the World Health Organization
(WHO) revised its treatment guidelines to
recommend HIV treatment initiation at CD4
counts of 350, as against the previously
recommended threshold of 200. They also
advocated for the phasing out of the ARV
d4T (stavudine, Zerit), in favour of bettertolerated but pricier ARVs.
In the DRC and Malawi, plans to increase
the number of health facilities providing
prevention-of-mother-to-child-transmission
(PMTCT) services have been jeopardised.
So have ambitions in countries such as
Mozambique to move more people on
to better HIV treatment, in line with the
WHO guidelines, according to the MSF
report. Earlier treatment and better drugs
have increased the costs of national
treatment programmes. In September
2010, Malawi partially adopted the WHO
recommendations. This at least doubled
national treatment costs. In light of the
cancellation and decreased Global Fund
resources, which fund the purchase of
almost all ARV drugs in the country, Malawi
will continue enrolling new patients but will
not be able to switch existing patients to
newer, better tolerated drugs, according to
OSF’s The First to Go report.6
Dwindling alternatives
With less access to PMTCT, affected
countries may also see an increase in the
number of babies born HIV-positive at a time
when money for paediatric HIV treatment
is shrinking. The MSF report cites multiple
examples of UNITAID support for paediatric
HIV treatment coming to an end in countries
such as Swaziland, Uganda and Zimbabwe.
HIV treatment update | Issue 212 | Summer 2012
The World Bank, which is the second
largest multilateral donor to HIV, is also
phasing out funding for the DRC, Malawi and
Mozambique by 2012, as it takes on a more
technical assistance role.
In Zimbabwe, Round 11’s cancellation
coincided with the Expanded Support
Programme’s end. Funded by the United
Kingdom, Sweden, Norway, Ireland and
Canada, this programme will be replaced
with the Health Transitional Fund, which
will focus on nutrition and on maternal and
child health. According to MSF, this has
contributed to a treatment gap of about
66,000 HIV patients in the country who
will not be able to access treatment in 2012.
While UNAIDS’ Zimbabwe operation
is working with government to increase
private sector investment into the HIV
response, it estimates this will take several
years to take off. In the meantime, it
predicts, by 2015 about 360,000 people
in the country will go without treatment,
according to OSF’s report.
More than ten years ago, Zimbabwe
introduced an AIDS levy to compensate for
decreased donor support. In 2010, the levy
collected US$20.5 million, representing
almost a 260% increase in collections over
the previous year. This was primarily due to
contributions from industry, according to
a statement released by the National AIDS
Council of Zimbabwe.7
According to Asia Russell, Director of
International Policy for activist group
Health GAP, Zimbabwean civil society is
now advocating for its government to
increase the proportion of the levy spent on
treatment from 50 to 80% in order to plug
the gaps.
In addition, some countries – Zimbabwe
included – are reprogramming existing
Global Fund grants away from HIV
prevention in order to shift cost savings
towards essential HIV and TB medicines and
diagnostics, according to OSF.8
In 2011, UNAIDS released its strategic
investment framework.9 Premised on six
basic programmatic activities, including
PMTCT, medical male circumcision (MMC)
and behaviour change, authors argue that –
if implemented – the framework could avert
more than 12 million new HIV infections
and almost 7.5 million AIDS-related deaths
between 2011 and 2020 worldwide.
While most countries seem to be
safeguarding biomedical prevention
methods such as PMTCT and MMC, the
OSF research found that other aspects of
prevention, such as the framework’s socalled “critical enablers”, or programming
in areas such as human rights, communitybased capacity building and retention in
care, were being deprioritised.
What you’ll want
[in a candidate] is
someone who
understands how to
work diplomatically
and collaboratively
with other major
institutions, who
appreciates the needs
of the poor, and is able
to balance these
against the priorities of
donors in a way that
minimises conflict.
Laurie Garrett,
Senior Fellow for Global Health,
Council of Foreign Relations
7
Deprioritising prevention comes at a time
when new infections continue to outstrip
treatment coverage.
Professor Alan Whiteside is head of
the Health Economics and HIV Research
Division (HEARD) at South Africa’s
University of KwaZulu-Natal. “The problem
with prevention is it is seen as a poor relative
to treatment – it is long term, messy, and
attributing results is difficult,” he says.
He adds: “My big concern is [that]
prevention will lose resources. Given there
are still more new HIV infections than people
put on treatment, this will be a problem until
such time as we see the AIDS transition.”
The concept of an ‘AIDS transition’
was developed by Center for Global
Development (CGD) senior fellow Mead
Over. It plots a strategy to minimise HIV
and argues that, to end local epidemics,
countries will need to sustain recent
reductions in mortality and bring down
HIV incidence.10
PEPFAR meanwhile is scaling back
funding for some countries, such as South
Africa. Amanda Glassman comments that,
ideally, PEPFAR would look to transition
their funding of non-governmental
organisation (NGO) partners to government
contracts with these same organisations
to facilitate continuity of care – but most
governments don’t have a PEPFAR-sized
budget to do this.
With a goal of initiating 400,000 people
on ARVs annually, the South African
treasury has projected that maintaining
this pace in the next four years will lead to
funding shortfalls.
Michael Gerson says that, although
President Barack Obama has moderately
increased HIV funding and made America’s
first multi-year commitment to the Global
Fund, donations to the Fund are unlikely to
see large increases anytime soon.
He adds: “In a political environment
where bipartisanship is rare, AIDS has been
a hopeful example of co-operation and
common purpose. But during the next
four years, regardless of who wins the
next American presidential election, we
are not likely to see the scale of funding
increases we’ve seen in global health during
the last decade.”
The shifting aid paradigm
As international funding decreases, the
debate over whether or not middle-income
countries should continue to receive aid has
heated up. These countries are seeing gains
in gross domestic products, but many are
also seeing a rise in inequality. Up to a billion
of the world’s poor now call these countries
home, according to a CGD working paper.11
Some argue that these countries
8
HIV treatment update | Issue 212 | Summer 2012
should continue to receive aid as long as
it is directed to the poorest or the most
vulnerable. Others advocate that middleincome countries should charge their middle
classes sufficient income tax to fund HIV
treatment and prevention services.
GAVI, for instance, already limits funding
to countries with a gross national income
per capita of less than US$1500. When
countries surpass this, funding is phased out
over three years. According to a recent blog
published in the The Guardian by Glassman
and visiting CGD fellow, Andy Sumner, by
2015 GAVI will phase out support to 17 of its
largest current recipients.12
The Global Fund’s cancellation of Round
11 was not enough to sustain current grants
and finance its stop-gap measures, so the
board also suspended funding for some lowburden, upper-middle-income countries
such as China, Brazil and Russia.
The Fund is now reviewing its policy
of allocating 45% of all grants to middleincome countries, according to Aidspan
founder and former Executive Director
Bernard Rivers.
The move away from funding middleincome countries was proposed in 2010
by the US-based policy NGO Results for
Development in a study published in The
Lancet. The study, which developed costings
for four HIV treatment and prevention
scenarios, estimated that – without a cure
or vaccine – as much as US$722 billion might
be needed to tackle the pandemic by 2031,
a third of which would be needed in Africa.
Authors argued costs could be substantially
lower if donors made hard choices now,
including phasing out aid to middle-income
countries that have the resources – but
perhaps not the political will – to support
programming for relatively small epidemics
among vulnerable groups, such as sex
workers, men who have sex with men
(MSM) and injecting drug users (IDUs).13
Russia may be a perfect example of a
country with the resources, but not the will,
to address HIV. As the country’s economy
rose, it began to position itself more strongly
geopolitically, and became a Global Fund
donor. But HIV prevention efforts in the
country continue to lag, according to Denis
Godlevsky, advocacy officer of the HIV/
AIDS International Treatment Preparedness
Coalition in Eastern Europe and Central
Asia. With Russia now classified as an upper
middle-income country, international
funding has dwindled. Meanwhile, the
country continues to ignore its IDU
population despite its HIV prevalence rate
of almost 40%.14
“There are still a lot of people in Russia
who believe HIV does not exist,” Godlevsky
says. “Basically, there is no sexual
We have an
emerging opportunity
to drive the epidemic
into the ground.
Mark Dybul, former US Global
AIDS Co-ordinator
In my five years
with the Global Fund,
what I have clearly
perceived is that the
most powerful
message to attract
funding and gain the
trust of donors is to
show results and
cost-efficiency. To tell
someone that the
cost of first-line ARVs
is now US$85 per
patient per year, and
that saves a life, is
something very
powerful.
Michel Kazatchkine, former Executive
Director of the Global Fund to Fight
AIDS, TB and Malaria
reproductive health education in schools,
no condom distribution, no long-term
campaigns on TV… no harm reduction
services, because basically the government
doesn’t support harm reduction as a policy.”
Shona Schonning, the former Program
Director of the Eurasian Harm Reduction
Network, agrees that Russia’s burgeoning
middle class is also not willing to pay to
support the handful of organisations
offering harm reduction services, including
the provision of clean injecting equipment
or methadone, which Schonning says should
be a governmental responsibility.
“The whole issue is that the populations
that need support are highly stigmatised
in Russian society and, until recently, there
wasn’t a culture of making donations,” she
says. “The tax structure has improved and
people are wealthier, but it would be a lot
easier to gather money for kids with cancer
than for heroin users.”
In the absence of local support, one
Moscow-based NGO providing harm
reduction services, the Andrei Rylkov
Foundation for Health and Social Justice,
has launched an international campaign for
donations through the online giving site,
GlobalGiving.
According to the World Bank’s Global AIDS
Program Director, David Wilson, middleincome countries might not need financial
support so much as technical support.
“It’s true that HIV tends to be higher
in somewhat better-off countries and to
some extent that is tied up with greater
mobility and inequality,” Wilson says. “We’re
suggesting that HIV be tackled differently
in countries that have resources. It doesn’t
mean there’s not a role for international cooperation …but the form of support it takes
may be very different.”
But Asia Russell argues that countries
may still benefit from initial investments in
HIV treatment and prevention. These could
result in attitude gains that could strengthen
the political will needed to ensure a longterm response to most-at-risk populations.
“What you find in many countries with
higher incomes are concentrated epidemics,
where inputs have been neglected for years
for political reasons and where catalytic
support from outside is needed initially,”
Russell says. “But ignoring the country
because it has a higher GDP is flawed and
misguided…it will not free up resources
commensurate with the gap in HIV funding
and it would be misinformed to think of it as
a resource mobilisation strategy.”
What the future holds
The United Nations estimates there is a
US$9 billion gap in the HIV funding needed
to meet its 2015 goals, including halving
HIV treatment update | Issue 212 | Summer 2012
HIV incidence and eliminating paediatric
infection. Meanwhile, the Fund has already
begun its next chapter, setting up an
appointment committee to select the next
executive director.
According to Laurie Garrett, the right
incoming executive director stands to
benefit from some powerful and seemingly
willing allies – if he or she can effectively
collaborate with them. Ban Ki-moon
has been re-elected to the post of UN
Secretary-General, Dr Margaret Chan has
been re-elected as the head of WHO and
global health activist Jim Yong Kim has been
appointed as President of the World Bank.
Garrett says: “What you’ll want [in a
candidate] is someone who understands
how to work diplomatically and
collaboratively with other major institutions,
who appreciates the needs of the poor, and
is able to balance these against the priorities
of donors in a way that minimises conflict.”
She says that the right candidate would
need to be proficient in at least three major
languages.
“I think things we can forget about are
[particular] race, ethnicity and gender as
prerequisites, I’d hope we were past
that,” she adds. But according to Bernard
Rivers, the Fund plans to shortlist four
candidates by November – two of whom
must be women.
To fill the funding gap, the price of
second-line and paediatric ARVs will have
to decrease, according to the UN, which
has begun advocating more heavily for
the use of the World Trade Organization’s
Agreement on Trade-Related Aspects of
Intellectual Property Rights (TRIPs) to
secure lower drug prices.
Meanwhile, activists and economists have
proposed the introduction of a financial
transaction, or ‘Robin Hood’ tax, that could
generate US$48 billion annually across
G20 countries if implemented at the lowest
proposed rate.
In the meantime, donors will have to
look at how to do more with less, achieving
greater efficiencies. This is something
in which the Fund has a comparative
advantage over donors like PEPFAR, which
continues to channel large amounts of
funding through US-based partners.
“You can provide funding less expensively
if you don’t have to go through certain
bilateral US contractors,” Glassman says.
“From 2008, many of PEPFAR’s top
contractors were universities in the US – an
approach that allowed for rapid, immediate
scale-up. However, universities are among
the most expensive of organisations to
work through, particularly for service
provision activities. Some have overheads
of more than 100%. They don’t disclose that
If we wait five years,
as some might be
tempted to do in the
current financial
climate, that’s not
going to work because
epidemics might be on
the upswing as they
are in Uganda. If we
wait until then, not
only will it be more
expensive but it might
not be possible.
Epidemics are a lot
harder to control on
the way up than on
the way down.
Mark Dybul, former US Global
AIDS Co-ordinator
9
publicly, but it’s an expensive way to
provide care.”
There may be a shift away from these
service providers as the need for clinical
treatment trials declines, according to
Glassman. But she added that PEPFAR also
may need to work on the way it disburses
money after recent media reports about
US$1.5 billion in unspent funds.
Those formerly at the helms of the
Global Fund and PEPFAR say that these
organisations will have to be able to
demonstrate results and value for money,
now more than ever.
Michel Kazatchkine says: “In my five
years with the Global Fund, what I have
clearly perceived is that the most powerful
message to attract funding and gain the
trust of donors is to show results and costefficiency. To tell someone that the cost of
first-line ARVs is now US$85 per patient
per year, and that saves a life, is something
very powerful.”
Mark Dybul, former US Global AIDS Coordinator (leading the implementation of
PEPFAR), agrees.
“Results drive money,” he says. “There’s
a way of increasing value for money by
changing the way we operate and that
becomes yet another argument for securing
resources.”
Both men are also adamant that
international funding for HIV is not a
charitable movement – it’s economic sense,
particularly at a time when the world may be
in a short-lived window within which to end
the HIV pandemic, according to Dybul.
“We have an emerging opportunity to
drive the epidemic into the ground,” he says.
“If you look at sub-Saharan Africa, with
the exception of one or two countries,
you see HIV prevalences on a downward
trajectory,” Dybul added. “If we layer in
these new prevention modalities in to these
downward trajectories, there are models
that show we can achieve 0.05% incidence
rates, which means epidemics
are completely controlled.”
“If we wait five years, as some might
be tempted to do in the current financial
climate, that’s not going to work because
epidemics might be on the upswing as they
are in Uganda,” he adds. “If we wait until
then, not only will it be more expensive but
it might not be possible. Epidemics are a lot
harder to control on the way up than on the
way down.”
Laura Lopez Gonzalez is a freelance
health journalist based in Johannesburg,
South Africa, and worked as a research
consultant on the Open Society
Foundation’s recent Global Fund research
quoted in this piece.
The gay
10
HIV treatment update | Issue 212 | Summer 2012
In the last two years, three internet surveys in Europe, the USA and
Asia asked over 200,000 gay men and other men who have sex with
men (MSM) about sex, safety and stigma. Gus Cairns looks at some
of the data, and finds a mix of the expected and the unexpected and
some challenging findings for HIV prevention.
HIV increasing globally in gay men
In high-income countries, gay men were
the first group to start dying from HIV. Now,
there are worrying signs that they may
also be the last out of the epidemic. The
percentage of the general population with
HIV is decreasing slowly in most regions of
the world but the proportion of gay men
who have HIV is increasing in many of the
same areas.
UNAIDS estimates that the peak year for
new HIV infections was 1997;1 here in the
UK, overall HIV diagnoses per year peaked
in 2005 and have since declined by 15%. In
gay men, however, they increased by 35%
in the same period.2 France has seen the
same pattern.3 In the US, new diagnoses
run at a steady 48,000 a year, but in young
gay men they increased by a third in the last
four years, and in young, black, gay men by
a half.4
We are seeing a sequence of increases in
HIV in MSM in Asian countries. In 2003, a
study found that one in six MSM in Bangkok
had HIV. Two years later it was nearly
one in four and has stayed at that level.
New diagnoses in MSM doubled in Japan
and tripled in Taiwan between 2002 and
2007. The Philippines has seen a sevenfold
increase in HIV diagnoses amongst MSM
under 30 in the last four years. Wherever
you look in Asia’s expanding cities, you find
high levels of HIV among MSM: one in eight
in Chonqing, China (up from one in 50 six
years ago), one in six in Mumbai, one in three
in Yangon.5 There are fewer reliable statistics
from Africa, but surveys in high-prevalence
countries there find that HIV in MSM is at
least as high as it is in the general population,
while in low-prevalence countries, such as
Senegal, it is ten times higher.6
In some places discrimination against
MSM is such that we’ve simply had no data.
Up to 2009, for instance, only 158 of the
estimated 350,000 people with HIV in
Ukraine admitted they got it through malemale sex.7 HIV prevalence in gay men is now
estimated at 8% in Russia and Ukraine, and
one survey found that a quarter of MSM in
the Ukrainian city of Odessa had HIV.8
A dangerous situation
This is, potentially, a dangerous situation
if HIV concentrates amongst MSM in
countries where to seek testing and
treatment is potentially to expose yourself
to persecution. The potential for intensifying
the oppression both of gay men and of
people with HIV is obvious.
Yet the threat of HIV in MSM tends to
get downplayed by some of the big global
organisations. The Global Forum on MSM &
HIV – see www.msmgf.org – was so troubled
by the low level of acceptance of papers on
MSM submitted to the International AIDS
Conference this year, they called for rejected
abstracts so they could be featured at the
MSMGF pre-conference.
One excuse sometimes given for
neglecting MSM is that they are hard to
reach, so we don’t know enough to design
prevention and treatment programmes
to meet their needs. It’s now become a lot
harder to make that claim.
y globe
HIV treatment update | Issue 212 | Summer 2012
11
In 2010, three regional surveys took
place in different parts of the world,
utilising a phenomenon that has led to
more contact between MSM, more
activism, more awareness, more sex and –
unfortunately but perhaps inevitably –
more HIV: the internet.
Three surveys
First off the blocks was the Asia Internet
MSM Sex Survey (AIMSS), spearheaded by
the Singapore-based gay website Fridae, in
partnership with the University of Pittsburgh
and 40 in-country MSM organisations. This
was an expanded, multilingual version of
the first survey ever done in Asia, which
Aidsmap reported on in 2010.9 The new
survey was completed by 13,883 men in
twelve countries stretching from Thailand
to Japan in January and February 2010,10
asking about their sexual behaviour in the
previous six months, drug use, how they
met other men, and whether they discussed
HIV. It published a preliminary report in July
2010 and several papers on its findings have
appeared in the last few months.11, 12 , 13
The Online Buddies Men’s National Sex
Study (MNSS) was completed in October
2010, by 24,787 gay men in the US. It was
also a collaboration between a commercial
gay site and an academic institute, in this
case Manhunt and the Center for Sexual
Health Promotion at Indiana University.
MNSS was a rather different kind of survey.
Head researcher Joshua Rosenberger is
concerned that an over-emphasis on HIV
risk fails to capture the variety of gay men’s
12
HIV treatment update | Issue 212 | Summer 2012
sex lives and turns sex between men into a
problem. So MNSS asked people what they
had actually done the last time they had
sex – both in order to widen the discussion
beyond conventional ideas of safer sex,
and because it’s easier to remember what
you did last time than during the last
six months. For the same reasons they
deliberately excluded HIV status from their
published papers about the survey 14, 15
and from the entertaining and inventive
front-page ‘report’ on some of the findings
which came out a year later (see www.
mensnationalsexstudy.com).
These two surveys got nearly 40,000 gay
men in two parts of the world to talk about
their sex lives; two to three times as many as
the single largest national survey of sex – gay
or straight – ever conducted. Impressive?
These were dwarfed by EMIS, the European
MSM Internet Survey,16 which took place
from June to August 2010. EMIS collected six
times as many responses – a total of 181,490.
EMIS was a large, European Unionfunded collaboration co-ordinated by the
Robert Koch Institute (RKI) in Germany,
in collaboration with other research
institutes such as Sigma Research in the
UK, commercial websites, academics,
and literally hundreds of local partnership
organisations. It took place in 38 different
European countries and was conducted in
25 languages.
EMIS was helped by the involvement
of several commercial internet sites such
as Gaydar, Manhunt and Planetromeo,
which sent out individual messages to their
subscribers urging them to do the survey.
Germans completed the largest number of
surveys – some 56,000 – but by involving
local sites such as Qguys in eastern Europe,
useful numbers of responses came from
countries like Russia (5263 respondents)
and Ukraine (1787) where we’ve known
little before. The final report on EMIS has
been delayed but the EMIS website features
two community reports giving interesting
interim data from the survey.17 National
reports, including raw data from the UK,18
have started to appear.
The findings
There are far too many data to include every
interesting finding – the draft report on
EMIS alone comes to 248 pages and that
only mentions a tiny fraction of what can
be gleaned. So what follows is a sample of
interesting facts and themes, rather than
any systematic review.
We’re going to compare some results
across surveys. Researchers hate doing this,
because so much depends on who answers
the survey and how questions are asked but
we’re not scientists here, so here goes.
Age and education
The age of respondents was 38.5 (mean)
in the US survey and 34.1 in the European,
and the median age in the Asian one was 29.
In EMIS, the age of respondents changed
smoothly from 35 in the west to 29 in the
east, with extremes in the Netherlands (40)
and Moldova (25). In the US and western
Europe, it’s been getting easier to be out as
gay to yourself and others for a long time;
in eastern Europe and Asia we are seeing a
young, educated new generation coming
out for the first time.
This showed in the statistics on education
and where people lived. On average,
more than half of respondents in all three
surveys had a college or university degree.
In EMIS, however, this ranged from 34% in
the central-west countries (Switzerland,
Germany, Austria) to 72% in the former
USSR; similarly, while only a quarter of
central-west respondents lived in a big city,
three-quarters of east Europeans did.
In the UK, the age distribution was
interesting: London had half as many men
under 20 and a lot fewer men over 50 than
the rest of the country, suggesting that gay
men may gravitate to the capital city in their
20s but tend to move away as they age.
Sexuality and relationships
At least three-quarters of men defined
themselves as ‘gay’ in the surveys; 13% in
the US, 15% in Europe and 16.5% in Asia said
they were bisexual. Very few used other
definitions. In EMIS, a lower proportion
defined themselves as exclusively gay in
the east.
The percentage
of the general
population with HIV
is decreasing in most
regions of the world
but the proportion of
gay men who have
HIV is increasing in
many of the same
areas.
Only a minority had a primary partner.
In Asia, only 33% of men had been in a
relationship for more than six months, and
in the US 42% had had one for more than
three months. In EMIS, the pattern wasn’t
necessarily what you’d expect: 41% of
people in the western European countries
(UK, France, Belgium) had a partner and
about a third in the Mediterranean countries
and the Balkans: but the highest proportion
with a boyfriend was in the former USSR
and a higher proportion of them lived with
their partner. Western Europe, however,
had by far the highest proportion of people
in a long-term relationship (over ten years):
22%, compared with just 5% in former
eastern-bloc countries.
Sex and condoms
About 85% of gay men in all three surveys
had had anal sex during the previous six
months or a year, but methodology of the
US survey revealed that they certainly didn’t
do it every time. Only 37% had anal sex
last time they had sex, and other activities
were much more common: in MNSS and
EMIS, three-quarters of men had given or
received oral sex last time they had sex,
and oral sex was more popular than mutual
masturbation.
Although the condom statistics are stated
in many different ways, in MNSS and EMIS
at least, ‘[using] a condom every time’
was a minority behaviour. In EMIS 58% of
respondents reported at least one episode
of unprotected anal intercourse during the
last year. In MNSS, only 45.5% of men used
a condom the last time they had anal sex
and the only age group in which more than
half (52%) used condoms last time was
the under-25s. There was a steady decline
in condom use with age, and the over-50s
were, in the US survey, half as likely as the
under-25s to use a condom. There were
interesting ethnic differences: AfricanAmerican, Hispanic, and Asian men were
all significantly more likely to have used
a condom the last time they had anal sex
compared to their white counterparts.
In AIMSS, rates of condom use were
higher, with only 41% of respondents saying
they’d had unprotected anal sex over the
last six months. However, it found much
lower rates of use amongst its minority of
HIV-positive men.
Is condom use the best indicator of risk?
One particularly fascinating finding came
from MNSS and somewhat vindicated its
taking the focus off condom use. The most
common safer-sex strategy in the MNSS
respondents was not “Use a condom with
me” but ”Don’t cum in me”. Semen was seen
as highly erotic by MNSS respondents: 84%
HIV treatment update | Issue 212 | Summer 2012
said it was arousing, 61% said they liked the
taste and 51% said they liked it inside them.
But when it came to it, relatively few actually
let someone ejaculate in them anally or did it
to their partner last time they had sex even
with a condom – 15.5%, to be exact (12.5%
let their partner come in their anus when
wearing a condom and 11.3% did it to them
while wearing a condom).
Only 20% of those who let their partner
come in their anus and only 23% of those
who came in their partner’s did not use a
condom. This means that anal sex without
a condom and with ejaculation only
occurred in 2.5% of respondents’ recent
encounters. Coming in other places was
more popular: 32% in their face or mouth
and 25% on their chest.
This may indicate that much more
nuanced safer-sex messages are needed.
Gay men are attempting to use more ways
to protect themselves than are endorsed
by standard prevention messages. Some
may be very flawed, but others may offer
significant protection and should be
encouraged. In the ART era, there have been
few studies of the per-contact risk of HIV
infection in gay men, but one that did look
at this found that if withdrawal happened
before ejaculation, there was less than half
the risk of HIV transmission.19
HIV prevalence and testing
In Asia, an overall 6% of respondents had
been diagnosed HIV positive, ranging from
2% in China to 12% in the Philippines. In
Europe, the overall rate was 4.1%, ranging
from 15.6% in the Netherlands to zero in the
163 respondents from Bosnia. MNSS in the
US didn’t publish HIV rates but in its 2009
survey HIV prevalence was 14.5%.
Seventy per cent of EMIS respondents
had ever tested for HIV. About a third (35%)
had tested in the last year – exactly the
figure for the UK. Testing frequency tended
to follow national HIV prevalence with high
levels in western Europe, the Mediterranean
and former USSR, and lower levels in central
Europe, though with several exceptions.
France had the highest proportion of men
who had taken a test in the last year (47%)
and Lithuania the lowest (20%).
One particularly alarming finding in EMIS
was that there was no correlation between
taking an HIV risk in the last year and having
had a test. The proportion of men who’d
had unprotected sex with a casual partner
of opposite or unknown HIV status in the
last year and who had also had a test ranged
from 40% in western Europe to 20% in the
Baltic states.
Just under 60% of Asian respondents
(80% in Thailand, under 50% in the
Philippines) had ever tested for HIV and
The surveys
Asia Internet MSM Sex
Survey (AIMSS)
In January and February
2010, AIMSS was completed
by 13,883 men in twelve
countries, from Thailand
to Japan.
The Online Buddies
Men’s National Sex
Study (MNSS)
In October 2010, MNSS
was completed by 24,787
men in the US.
European MSM Internet
Survey (EMIS)
From June to August 2010,
EMIS was completed by
181,490 men in 38
European countries.
13
14
HIV treatment update | Issue 212 | Summer 2012
about a quarter in the last six months,
ranging from a third in Thailand and South
Korea to one in five in the Philippines – a
similar frequency to Europe.
HIV incidence
In Europe, the proportion of men who’d
taken an HIV test in the last year who
had received a positive result was used to
give a rough indication of the ‘hotness’ of
the epidemic; some worrying signs were
found of a sharp increase in HIV in eastern
Europe. The proportion of those who
tested positive was about a third in
Romania and Bulgaria and about a quarter
in the other former communist countries,
but only one in eight in western Europe
and one in 14 in Scandinavia.
The Asian survey did not seek to establish
HIV incidence in respondents in the same
way, but one of its reports20 mentions that
HIV incidence in MSM in recent surveys is
particularly high in some cities, especially
in what has hitherto been relatively lowprevalence mainland China: last year it was
found to be 5.1% a year in Nanjing and 7.6%
in Chongqing, the kind of incidence only
seen in rapidly expanding epidemics.
strangely, in Norway). With the exception
of Norway, ART success was also correlated
with the Human Development Index of the
country, i.e. its prosperity.
One really interesting, and strong,
correlation was between the proportion
of people with HIV who were on ART and
the growth rate of the epidemic. To take
the extremes, in Denmark 87% of those
with HIV were on ART and the annual HIV
epidemic growth rate was estimated at
6.5%; in Ukraine just 44% of those with
HIV were taking ART and the epidemic
growth rate in respondents was estimated
at 25%. This may be indirect evidence for
the success of treatment as prevention – or
it could just be an indicator that in younger
epidemics, fewer people are on treatment.
Each survey
sought to establish
emotional indicators
of sexual happiness,
not just cold facts
about viruses,
condoms and
semen.
Happiness, disclosure and isolation
Each survey sought to establish emotional
indicators of sexual happiness, not just cold
facts about viruses, condoms and semen.
EMIS asked its respondents how happy
they were with their sex lives and found a
wide variation. In France only 28% were
unhappy with their sex lives, while in Bosnia
– at the other extreme – 60% were unhappy
with theirs (Brits were somewhere in the
middle). Bosnians, Macedonians, Cypriots
and Swedes were more than 30% unhappier
with their sex lives than the British; Belgians,
Dutch, Spaniards, Portuguese, Swiss and
French were more than 40% happier.
One challenging correlation, presented
by Ford Hickson of Sigma Research at the
European gay men’s prevention conference
(FEMP) in Stockholm in November 2011,21
is that there is a strong correlation in EMIS
between happiness and HIV prevalence:
Bosnia, sexually the unhappiest country,
was also the one whose small group of
respondents reported no HIV infections:
HIV treatment and
treatment as prevention
The age of the epidemic was related to the
proportion of men with HIV on antiretroviral
therapy (ART), which ranged from just
over 40% in Russia and Ukraine to 87% in
Denmark and 78% in France. Older epidemics
tended to have more people successfully
suppressing their viral load on ART too. In
the Netherlands, 88% of people on ART had
an undetectable viral load, compared with
only 51% in Ukraine. In Romania, Poland and
Russia, fewer than 75% of people on ART
had an undetectable viral load (also the case,
Top ten findings
1
In the US, avoiding
ejaculation in a
partner was a more
popular safer-sex
strategy than using
condoms.
2
In European countries,
the happier people
were with their sex
lives, the higher the
HIV prevalence in their
country.
3
In Europe, only 4%
of HIV-positive men
had never discussed
their HIV status with
a partner. In Asia,
only 33% had ever
discussed it.
4
In Europe, the higher
the proportion of men
with HIV who were on
treatment, the lower
the growth rate of the
HIV epidemic in that
country.
5
In the US, only 42% of
men had anal sex the
last time they had sex.
Oral sex was much
more popular.
HIV treatment update | Issue 212 | Summer 2012
conversely, the Netherlands and
France reported amongst the highest
rates of happiness and the highest HIV
prevalence rates.
In many ways this is a no-brainer: more
sex is likely to mean more HIV in a situation
where condom and other safe-sex usage
rates are roughly equal. In the UK, for
instance, the one area that stood out for
conspicuous sexual dissatisfaction in gay
men was the Scottish Highlands, and
highlanders also reported a distinctly lower
rate of sex generally – for obvious reasons
of geographical isolation.
One contrasted finding in the surveys that
dealt with HIV was disclosure of HIV status.
In EMIS, only 5.6% of respondents who had
HIV had never disclosed their HIV status to
any sexual partner, with the highest ‘never’
rate found in the Baltic states (13.3%).
In Asia, HIV status disclosure – to
any sexual partner – was the exception
rather than the rule: 67% of HIV-positive
respondents had never discussed their HIV
status with a partner, and in mainland China
that was 88%. Perhaps as a consequence
of this, a much higher proportion of
HIV-positive respondents in AIMSS with
a main relationship were in one with a
partner of unknown or negative status:
lack of disclosure makes serosorting
impossible. Condom use was no higher in
serodiscordant encounters or relationships
than in others. In many Asian countries,
disclosure of personal issues such as health
is in general more taboo than it is in the
West and this poses a huge challenge to
disclosure-based risk reduction practices.
In Europe, as we said above, the risk
was more that men may falsely believe
themselves to be HIV-negative, given
that recent testing did not correlate with
recent risk.
6
In Europe, the highest
HIV prevalence was
in western Europe but
the highest rate of
new infections was in
eastern Europe.
7
There are enough
data in these studies
to keep an army of
academics busy for
several years.
In Asia and Europe,
about a third of men
had tested for HIV in
the last year, though
this varied from 20
to 40% according to
country.
15
In fact, the HIV-positive minority formed a
highly isolated minority in AIMSS, with very
different risk patterns from the majority: a
far higher proportion had unprotected sex,
drank or took drugs, and went to saunas or
sex parties, than the majority.
Much more to report
There is a huge amount of data not covered
in this article, especially from EMIS: I
have missed out, for instance, fascinating
findings on STI treatment (showing that
the UK has one of the best STI services in
Europe); migration (showing that people
from minority ethnic groups were almost
universally at higher risk of HIV, in whatever
country); travel (showing that a high
proportion of gay men took their last HIV
risk abroad: Germany [probably Berlin] and
Spain were the most popular ‘dirty weekend’
destinations); and on a huge number of
different ways of measuring anti-gay and
HIV stigma and its effects. MNSS also had
a number of other findings, including that
older men have just as much sex and find it
more satisfying than younger ones.
There are enough data in these studies
to keep an army of academics busy for
several years, and the researchers are not
stopping here: the MNSS model is likely to
be extended to a South American gay men’s
sex survey and both AIMSS and EMIS intend
re-runs in the next year or two. Now it’s time
to pull all the data together and from them,
as Making it Count, the UK’s HIV prevention
planning document says, find ways of
helping MSM have the best sex with the
least harm.
Thanks to Axel J Schmidt and Ford
Hickson (EMIS), Joshua Rosenberger
and David Novak (MNSS) and Stuart Koe
(AIMSS) for their help with this article.
8
In Europe, higher
HIV risk did not
mean more testing:
men who’d had
unprotected casual
sex didn’t test any
more often.
9
The European survey
shows that a high
proportion of gay men
took their last HIV risk
when they travelled
abroad: Germany
and Spain were the
most popular sex
destinations.
10
In the US, older gay
men had just as much
sex as younger ones –
and enjoyed it more.
w
e
n
e
Th
m
s
i
v
i
t
c
a
16
HIV treatment update | Issue 212 | Summer 2012
Guest writer Robert James looks at how the whole idea of being an
‘AIDS activist’ has changed in the era of treatment and long life.
W
hen I decided to do a PhD
thesis on how HIV activism
has changed in a developed
country since the arrival of
antiretroviral treatment (ART), I found it was
just about the only study of this subject. This
article describes a few of the changes I found.
What is an HIV activist?
Firstly, what is an activist? Perhaps more
than in any other disease area, people with
HIV have always been subject to stigma
and discrimination, jeopardising their lives,
rights and dignity. HIV activism grew out of
the response to this and its philosophy was
enshrined in the Denver Principles of 1983.1
Now, I found a lack of clarity about
what an HIV activist is among the people I
interviewed. This may, in itself, be an indicator
of how much HIV activism has changed.
Activism is often seen as being strongly linked
to protest; the process of ‘involvement’ can
seem too professional or sedate to be real
activism. Some considered activism to be
an unpaid activity, adding to the uncertainty
of those employed in organisations working
to promote the rights of people with HIV. As
one interviewee said, “Am I an activist? I don’t
know… I don’t know whether other people
would call me an activist”.
AIDS activism in the United States had
a reputation for being loud, brash and
dramatic, and the UK also saw its fair
share of protest and drama. But activism
has changed since effective ART became
available to stop HIV turning into AIDS.
At the start of the epidemic, AIDS and
HIV activism attracted huge interest from
writers, academics and journalists,2 but I
found that almost the only activism studied
now is about expanding access to HIV
treatment beyond the developed world.
Changes in activism in developed countries,
although significant and profound, have
been virtually ignored.
HIV treatment update | Issue 212 | Summer 2012
To find out about current treatment
activism I interviewed 15 HIV activists and
15 professionals, including doctors, nurses,
commissioners and policy makers working
in HIV. Many had been involved for over a
decade but some for only the last few years;
they included British and African people,
men and women, gay and straight.
Everyone agreed that HIV activism had
changed from protest to involvement:
activists who had started as outsiders,
demanding the right to be involved in
discussions about their treatment by medics
and the state, were now talking with clinicians
and government departments. In the words
of one activist, “People won’t listen to you
these days if you just rant and rave.”
Dialogue and engagement
The activists interviewed felt involvement
and dialogue were effective approaches:
“Engagement, does it make a difference?
I’d say, absolutely, and I can give you
examples.” Instances highlighted as areas
where involvement played a role include
the development of guidance by the
Crown Prosecution Service on prosecutions
for HIV transmission, the shift in drug
trials to include more women, and the
development of equality laws to include
everyone with HIV.
Although the HIV voluntary sector may
now appear to be a group of professional
organisations which have a calm and
considered working relationship with
medics and the government, many started
out using very different tactics to get their
messages across. A good example is the
relationship between activists and BHIVA,
the British HIV Association, which – amongst
other things – writes the clinical guidelines
about managing HIV treatment and care.
The first set of guidelines, produced
in 19973, prompted angry protests
from activists, including the disruption
of conferences, for not allowing
positive people a voice in the writing
of the guidelines and for over-cautious
recommendations on the use of new
treatments. Now, not only do people
with HIV sit on the BHIVA guideline
writing committees, but a draft version of
guidelines is also made publicly available
for people with HIV, activists and other
interested parties to comment on. BHIVA
also has a ‘community representative’ on its
management group and most, if not all, of its
other committees. These representatives
are chosen by a network of HIV activists and
organisations (called UK-CAB) and not by
the medics.
Getting involved in treatment activism,
patient involvement in the NHS, or
volunteering in – or even setting up – a
Engagement, does
it make a difference?
I’d say, absolutely,
and I can give you
examples.
community organisation means engaging
with systems that all have their own
structures and languages, whether relating
to medicine, commissioning, management
or law. This knowledge barrier can be
intimidating and a deterrent, but those
who overcome it become empowered by
their deeper understanding to debate with
professionals on a more equal basis.
The change from protest to involvement
has brought a greater emphasis on
knowledge of where and how to get
involved; this has become a common goal
of conferences for people with HIV in the
last few years.4 Patient involvement was a
relatively new and unusual development
in health care at the time the HIV epidemic
started, and the success of partnership
working between patients and doctors in
HIV gave added impetus for it to become
one of the primary goals of NHS policy.
Patient groups
Another important change since effective
ART became available has been the
formation of patient groups rather than
community groups.
From the 1980s onwards, a multitude
17
of community-based HIV organisations
appeared: some, such as the Terrence
Higgins Trust in London and George House
Trust in Manchester, were set up to do HIV
prevention work and provide services to
people with HIV and AIDS; others were
self-help groups where people with HIV
met to support each other. In London,
Body Positive, Positively Women (now
Positively UK) and later the UK Coalition5
formed as self-help groups and went on
to become large organisations employing
staff and providing services. Many local
groups adopted the Body Positive name and
attached the name of their town or area,
such as Brighton Body Positive or Thames
Valley Body Positive (now Thames Valley
Positive Support).
Many smaller groups have since closed,
partly as a result of funding cuts but also
because needs changed with the arrival of
ART. Community groups, such as Positively
UK and OPAM (the Organisation of Positive
African Men), continue to exist, but ART,
and the fact that many people with HIV
are now working, has led to a relocation of
peer support from the community to the
clinics. During the last ten years, patients
and staff at a number of clinics, particularly
in the London hospitals, have set up groups
for people with HIV using those clinics.
Although these groups are concerned with
social issues affecting people with HIV, their
primary focus is the clinic and care of people
with HIV at their hospital.
The internet, too, has enabled a
migration of peer support to online,
virtual communities such as PozFem and
myHIV.org.uk.
In summary
The change that ART brought to people
with HIV was extraordinarily dramatic in its
impact on lifespan and quality of life. But it
has changed activism too: if you liked angry,
dramatic protest it can feel as though HIV
activism has disappeared, but in reality it
has mutated into a more subtle form. From
being outside protesting about decisions
made by other people and demanding to be
let in, activists have now come inside.
Since his HIV diagnosis in the late 1980s,
Robert James has, for much of his
time, been involved in HIV groups and
advocating for people with HIV. He has
recently completed a PhD thesis looking
at the history of HIV activism in the UK.
He is planning to co-author a book on
HIV activism and would like to contact
people involved in HIV activism in the
past. You can contact Robert by email at:
[email protected]
18
HIV treatment update | Issue 212 | Summer 2012
News in brief
As well as our news reporting, the news pages on our website include selected stories from
other sources. Here we highlight stories from the last quarter – visit www.aidsmap.com/news
for the full news reports and references to the original sources.
prevention
The road to PrEP
Over the next three years, up to 33,000
people may take part in 22 studies
worldwide of pre-exposure prophylaxis
(PrEP – giving HIV-negative people
drugs to prevent HIV), the International
Association of Physicians in AIDS Care
(IAPAC) meeting Controlling the HIV
epidemic with antiretrovirals, was told in
June. Dr Jim Rooney of Gilead Sciences, the
manufacturer of Truvada (tenofovir/FTC, the
product used in the vast majority of these
studies), said that these studies were crucial
to establish whether PrEP may be less, or
more, effective in clinical settings than in
randomised, placebo-controlled trials. Trials
are ongoing or planned in the UK, France,
Latin America, Thailand and several African
countries, as well as in the US. The US Food
and Drug Administration voted for approval
of Truvada as PrEP in May this year but
confirmation, expected in September, is
subject to a Risk Evaluation and Mitigation
Strategy document. In Europe, the
European Medicines Agency has issued a
draft paper on the general requirements for
licensing HIV drugs for prevention.
www.aidsmap.com/page/2403757
epidemiology
Lack of testing fuels
UK epidemic
In the UK, most HIV infections in gay men
are transmitted by the undiagnosed,
Valerie Delpech of the Health Protection
Agency (HPA) told the IAPAC meeting.
She commented that good access to
antiretrovirals in the UK has not led to a
reduction in new infections: the annual
number of new HIV infections in gay men
changed very little between 2001 and
2010, with between 2000 and 3000 new
infections each year. The UK performs
relatively poorly in testing and diagnosis; it is
thought that at least a quarter of people with
HIV are undiagnosed and only 15 to 25% of
gay men have an HIV test in any one year,
she said. HPA modellers have calculated that
one-third of the 40,000 UK gay men living
with HIV are infectious and nearly two-thirds
of those are undiagnosed. Further work by
University College London has found that
nearly half of new infections are acquired
from men who themselves have been
infected in the last six months, many of
whom will have a very high viral load.
www.aidsmap.com/page/2393389
sexual health
Big increases in
STIs in England
There was a significant worsening in the
sexual health of people in England last year,
data released by the Health Protection
Agency (HPA) show. Cases of gonorrhoea
and syphilis were up by 25 and 10%
respectively against a background of a 2%
increase in all sexually transmitted infections
(STIs). The increase in gonorrhoea is
especially worrying as it is becoming hard to
treat, owing to the emergence of antibioticresistant strains. Gay men and other men
who have sex with men (MSM) had high
rates of STIs. The number of gonorrhoea
cases in gay and bisexual men increased
by 61% compared to 2010, chlamydia by
48%, genital herpes by a third, syphilis by
over a quarter and genital warts by 23%.
Three-quarters of syphilis cases in 2011 were
in this group, as were 50% of gonorrhoea
diagnoses. Some 16% of infections were in
the throat, which may be asymptomatic.
www.aidsmap.com/page/2374770
prevention
Intermittent PrEP may
lead to poorer adherence
People may find it significantly more difficult
to adhere to pre-exposure prophylaxis
(PrEP) if it is taken intermittently than if it is
taken daily, according to a study from Kenya.
The IAVI E001 study found that average
adherence among the individuals taking daily
treatment was 83%, but fell to just 55% for
those taking intermittent therapy. A total
of 67 men who have sex with men and five
female sex workers were recruited to the
study, which lasted four months. They were
divided into four groups: two which took
daily Truvada PrEP or placebo and two which
took it every Friday and Monday, plus an extra
dose after sex if they had it. Adherence to
the post-sex dose was especially low, at only
26%. Nevertheless, the authors believe that
intermittent dosing may still be appropriate
“if intracellular drug levels, which correlate
with prevention of HIV acquisition, can be
attained with less than daily dosing and if
barriers to adherence can be addressed”.
www.aidsmap.com/page/2379540
conception
NICE: Sperm washing not
needed if HIV-positive
partner on treatment
Draft UK guidance on fertility treatment says
that sperm washing may not be necessary
for couples where the man has HIV and
the woman does not, as long as the man is
on effective antiretroviral treatment and
unprotected sex is limited to days when his
partner is ovulating. The National Institute
for Health and Clinical Excellence (NICE),
which issues recommendations to the
NHS about the most effective and costeffective treatments to provide, does not
exclude people with HIV from access to
fertility treatments, such as intrauterine
insemination (IUI) or in vitro fertilisation
(IVF). NICE has also removed a previous
recommendation that the implications of
the parent’s HIV infection for the child’s
welfare “should be taken into account”. The
authors insist that their recommendation
is limited to the situation of a heterosexual
couple wishing to conceive who limit
unprotected sex to days when the female
partner is fertile (ovulating).
www.aidsmap.com/page/2364056
HIV treatment update | Issue 212 | Summer 2012
News picks from
other sources
Sign up for our free email bulletins at:
www.aidsmap.com/bulletins
DIAGNOSIS
TESTING
‘Glandular fever’
symptoms may be HIV
US set to approve HIV
home testing
HIV infections in people with suspected
glandular fever are often missed, according
to a study from the south London boroughs
of Lambeth, Southwark and Lewisham – the
area of highest HIV prevalence in the UK.
Retrospective testing of 1046 blood samples
submitted for glandular fever screening
showed that 11 people (1.3%) were in fact
infected with HIV and that three-quarters
of these infections remained undiagnosed
after the patient had seen their GP. A
request for an HIV test was submitted at the
same time as a request for glandular fever
screening for 11% of patients. Three of these
patients (3%) were found to be HIV-positive.
A further 45 patients (4%) had a subsequent
HIV test within a year of their glandular
fever screen, two of whom had HIV. In the
remaining 694 samples, six undiagnosed
HIV infections were found, three of which
had been recently acquired. Primary care
has an important role in the expansion
of HIV testing. People with primary HIV
infection may experience a seroconversion
illness and consult their GP, presenting with
symptoms including fever, muscle aches,
sore throat and rash.
www.aidsmap.com/page/2357556
HIV home testing is soon likely to become
legal in the United States, following a
unanimous vote in support of the OraQuick
In-Home HIV Test by experts advising the
Food and Drug Administration (FDA). The
test may be made available over the counter
and is designed to be used without medical
supervision. The user swabs an absorbent
pad around their outer gums; results take
20 minutes. This would be the first home
test for any infectious disease available for
purchase by US customers. The test kits come
with details of free telephone support. While
professional kits cost less than $20, the home
version is likely to be about $60. Studies
found a very low rate of false-positive results
from the kit; only two in 10,000 HIV-negative
samples tested HIV-positive. There was a
rather high number of false HIV-negative
results, with seven in 100 samples containing
HIV registering as HIV-negative. So a negative
result does not completely eliminate the
possibility of an infection, especially after a
recent encounter. However, the panel felt the
benefits of the test outweighed its potential
risks and could provide an important way to
make HIV testing available to more people.
www.aidsmap.com/page/2356465
References
Switching drugs for cost reasons –
the patient experience [p.3]
1 See www.londonscg.nhs.uk
2 See www.ukcab.net
3 Marshall N et al. Switching to atazanavir
due to therapeutic tenders: short term
outcomes. 18th BHIVA conference,
abstract P195, 2012.
Global AIDS funding [p.4]
1 Bendavid E et al. HIV Development
Assistance and Adult Mortality in Africa.
JAMA, 307(19): 2060-2067, 2012.
2 Open Society Foundations The First
to Go: Community-level effects of Global
Fund shortages in southern Africa.
Awaiting publication, 2012.
3 Rivers B et al. The Report of the
High-Level Panel – Strong and ThoughtProvoking, but with Worrying Flaws.
Aidspan, GFO Issue 160, 13 October 2011.
4 MSF Issue Brief Losing Ground: How
funding shortfalls and the cancellation of
the Global Fund’s Round 11 are jeopardising
the fight against HIV & TB. Médecins sans
Frontières, 2012.
5 Cohen M et al. Antiretroviral treatment
to prevent the sexual transmission
of HIV-1: results from the HPTN 052
multinational randomized controlled
ART. Sixth International AIDS Society
Conference on HIV Pathogenesis,
Treatment and Prevention, Rome,
abstract MOAX0102, 2011.
6 OSF, op. cit.
7 PlusNews Improved AIDS levy
collections fill part of funding gap. IRIN,
2012.
8 OSF, op. cit.
9 UNAIDS Issues Brief A new investment
framework for the global HIV response.
Joint United Nations Programme on HIV/
AIDS (UNAIDS/JC2244E), 2011.
10 Over M Achieving an AIDS
Transition: Preventing Infections to
Sustain Treatment. Center for Global
Development, 2011.
11 Glassman A et al. Global Health and
the New Bottom Billion: What Do Shifts
in Global Poverty and the Global Disease
Burden Mean for GAVI and the Global
Fund? Center for Global Development,
Working Paper 270, 2011.
12 Glassman A, Sumner A Vaccines
need to reach the poor in middle-income
countries too. The Guardian, 13 June 2011.
13 Hecht R et al. Financing of HIV/AIDS
programme scale-up in low-income and
middle-income countries, 2009-31. The
Lancet, 376: 1254-1260, 2010.
14 Mathers BM et al. Global epidemiology
of injecting drug use and HIV among
people who inject drugs: a systematic
review. The Lancet 372: 1733-1745, 2008.
The gay globe [p.10]
1 UNAIDS How to get to zero: Faster.
Smarter. Better. World AIDS Day Report,
2011. Joint United Nations Programme on
HIV/AIDS, 2011. See http://bit.ly/KAmE7o
2 Health Protection Agency. HIV in the
United Kingdom, 2011 report. Health
Protection Services, London, 2011. See
http://bit.ly/MzmQ81
3 Le Vu S et al. Population-based HIV-1
incidence in France, 2003-08: a modelling
analysis. Lancet Infect Dis 10(10):682687, 2010.
4 Centers for Disease Control
and Prevention HIV Surveillance –
Epidemiology of HIV Infection (through
2010). CDC, Atlanta, 2012. See http://1.
usa.gov/Nvh8sJ
5 van Griensven F et al. The global
epidemic of HIV infection among men who
have sex with men. Curr Opin HIV AIDS
4(4):300-307, 2009.
6 ibid
7 Utyasheva L HIV and the law in eastern
Europe and central Asia. Global Commission
on HIV and the Law, UNDP, 2011.
8 UNAIDS op. cit.
9 See www.aidsmap.com/page/1437431
10 Koe S Asia Internet MSM Sex Survey
2010 preliminary report. Fridae news, 23
July 2010. See http://bit.ly/N83BbG
11 Wei CG et al. Sexual transmission
behaviors and serodiscordant partnerships
among HIV-positive men who have
sex with men in Asia. Sex Transm Dis
19
Police HIV advice ‘outdated and
stigmatising’
The Guardian | 18 June 2012
Police forces are perpetuating
incorrect stereotypes about people
with HIV through guidelines that
suggest officers can be infected with
the virus through spit and sharing
toothbrushes, say campaigners.
http://bit.ly/MqQEGq
Nobel-prize winning BarreSinoussi optimistic about cure
BBC Health | 7 June 2012
The scientist who won a Nobel prize
for her work in first identifying HIV
says she at last believes finding a cure
for the virus which causes AIDS might
be possible.
http://bbc.in/MV3aer
Evidence that man cured of HIV
harbors viral remnants triggers
confusion
Science | 11 June 2012
Only one person has ever been cured
of an HIV infection, and a presentation
about the man at a scientific meeting
in Sitges, Spain, has caused an uproar
about the possibility that he’s still
infected.
http://bit.ly/NwtiNI
39(4):312-5, 2012.
12 Wei CG et al. HIV disclosure and sexual
transmission behaviors among an internet
sample of HIV-positive men who have
sex with men: implications for prevention
with positives. AIDS Behav, epub ahead
of print, 2011.
13 Wei CG et al. Patterns and levels of illicit
drug use among men who have sex with
men in Asia. Drug Alcohol Depend, 120(13):246-9, 2012.
14 Rosenberger JG et al. Sexual behaviors
and situational characteristics of most
recent male-partnered sexual event
among gay and bisexually identified
men in the United States. J Sex Med
8(11):3040-50, 2011.
15 Rosenberger JG et al. Condom use
during most recent anal intercourse event
among a U.S. sample of men who have sex
with men. J Sex Med 9(4):1037-4, 2012.
16 See www.emis-project.eu/final-report
17 See www.emis-project.eu/
community-1 and www.emis-project.eu/
community-2
18 See www.sigmaresearch.org.uk/gmss/
year/yr2010 and www.emis-project.eu/
national-reports
19 Jin FY et al. Per-contact probability
of HIV transmission in homosexual men
in Sydney in the era of HAART. AIDS
24(6):907-13, 2010.
20 Wei CG et al, 2012, op.cit.
21 Hickson F Towards better sex with less
harm for gay and bisexual men in Europe
FEMP, Stockholm, 2011. See http://bit.
ly/Mzouqd
The new activism [p.16]
1 See www.actupny.org/documents/
Denver.html
2 E.g. For the US picture: Patton C Sex
and Germs: The Politics of AIDS South
End Press, Boston, 1985; Shilts R And the
Band Played On St Martin’s Press, New
York, 1987; Epstein S Impure Science: AIDS
activism and the politics of knowledge
University of California Press, Berkeley,
1996; in the UK, Richardson D Women
and the AIDS Crisis Thorsons, London,
1987, Carter E, Watney S Taking Liberties:
AIDS and Cultural Politics Serpent’s Tail,
London, 1989.
3 Gazzard, B, Moyle G et al. British HIV
Association guidelines for antiretroviral
treatment of HIV seropositive individuals.
The Lancet, 349(9058): 1086-1092, 1997.
4 For example, the conference organised
by Positively UK, ‘No Decision about Me,
without Me’, 24 September 2011. See
www.positivelyuk.org/docs/2011_Winter_
No_Decision_Web.pdf for report.
5 The full name of the UK Coalition was
the ‘UK Coalition of People Living with
HIV and AIDS’. Body Positive and the
UK Coalition closed after some of their
funding was withdrawn while Positively
Women changed its name to Positively
UK in 2011.
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